Information & publications

DEBRA produces a range of booklets designed to give anybody living with EB, including individuals, families and carers, reliable information.

• About EB
• Fact sheets
• For parents, schools and playgroups
• Other
• Clinical Practical Guidelines

Working closely with specialist EB nurses and the NHS, a widespread review of all publications is currently underway to make them all easily available online, at which stage they will be added to the list below.

In the meantime, hard copies of booklets are available from the DEBRA office. Download a full list here and email it to [email protected] to request your copies. There is no charge for literature, but a contribution towards production costs and postage (suggested donation £2.50 for up to three publications) will enable DEBRA to continue its vital educational work.

 

About EB

• What is EB? infographic
• I have EB medical emergency cards
• EB Simplex Dowling Meara (© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)
• Mild Dystrophic EB (© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)
• Kindler Syndrome (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)
• Acral Peeling Skin Syndrome (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)

 

Fact sheets

• Advocacy
• Applying for Disability Living Allowance (DLA)- if your child has EB, they may be eligible for DLA, which is a benefit to help with extra costs arising from living with a condition or disability. You can download the form here. DLA is tax-free. You can claim even if you work or if your family has savings or money coming in. Contact the Community Support Team or call 01344 771961 (option 1) if you need assistance with the application or help filling out the form.
• Direct payments: care and support
• What are direct payments?
• Direct payments: a traffic light guide
• Education - starting or changing schools
• Education - college 
• The Equality Act (2010)
• Looking after your feet
• Swimming with EB
• Transferring to Personal Independence Payments (PIP)

  

Information for parents, schools & playgroups

• Care of a new baby with EB
• Nutrition for babies with EB
• Nutrition for children over 1 year of age
• EB for Parents, Schools and Playgroups
• Recommendations for Children with EB in Schools (for Education Staff) (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital Occupational Therapy Team)

  

Other

• EB: My Story - Young People Talk

 

Clinical Practice Guidelines

We fund DEBRA International’s clinical practice guidelines (CPGs) programme, which works with colleagues all over the world to provide professionals and patients with the best guidance and advice to manage different aspects of EB.

Current topics covered include:

Foot care: Dystrophic nail care DOWNLOAD	Foot care: Hyperkeratosis (callus) care for adults with EB DOWNLOAD
Foot care: Footwear advice for adults with EB DOWNLOAD	Foot care: Footwear advice for parents caring for a child with EB DOWNLOAD
Laboratory diagnosis DOWNLOAD	Occupational therapy: For adults with EB DOWNLOAD
Occupational therapy: For parents caring for a child with EB DOWNLOAD	Psychosocial care: For adults with EB DOWNLOAD
Psychosocial care: For parents caring for a child with EB DOWNLOAD	Psychosocial care: Support from your EB team DOWNLOAD
Skin and wound care: For adults with EB & their carers DOWNLOAD	Skin and wound care: For parents caring for a child with EB *coming soon*
Skin and wound care: Healthy body & skin DOWNLOAD

Visit the DEBRA International website to learn more and to download versions both for professionals working with EB and for people living with EB.

 

DISCLAIMER

The information on this website is not intended to replace professional health advice. The information is provided for informational purposes only. Although every reasonable effort has been made to ensure that the information on this website was accurate at the time of publication, we accept no responsibility for any errors, omissions or misleading statements on this site or on any site which you may be able to access through a link on this site.

The use or distribution of the information on www.debra.org.uk is at the sole discretion of the user or any subsequent third party and DEBRA does not take any responsibility for such use or consequences.